What A Year!

It's been a wild one! I remember thinking that 2012 was a doozy...little did I know what 2013 would turn out to be! Finding out about the SCT in March, going to Philly in April, coming back in August, going to Akron for most of September and October, and finally getting into the swing of things the past two months! Whew! We made it through and are enjoying Haddie every day. Praise God. Kate wrote a Facebook post that explains our doctors visit today:

Really good Doctors appointment this AM! No G-tube right now and we are allowed to remove the NG tube(feeding tube) from time to time at our discretion  Little Miss weighed 12 pounds 14 ounces and yesterday she took all feeds (except 3 AM) from the bottle. Biggest compliment from the Dr.... "You make fat babies, and that's what I like to see!" Yay! Haddie is finally chunky!!

So things are going very well. Haddie is growing and learning. We go to Akron on the 7th to get an EEG to see if she's still having sub-clinical (non visible) seizure activity. If not, we get to start playing with her seizure meds quickly. If so, we will start playing with her seizure meds at a slower pace.

We hope you all had a Merry Christmas and we wish you a Happy New Year. God bless!


Below is a picture of Haddie sleeping through the Browns/Steelers Game. She unfortunately lives in a house divided!

Seize-ure the Day

Like my creative yet stupid titles? Thanks. But hey, it gives you an idea of what this blog is about...seizures. The good news is that Haddie hasn't had any seizures for a long time! And the bad news is...well there really isn't any bad news. Praise God!

We took Hadassah to a Neurology visit on Wednesday in Akron and met her new and ongoing neurologist. To keep you straight because it can be confusing here's who we see:


Akron-
Neurosurgery- They deal with Haddie's shunt
Neurology- They deal with Haddie's seizures and medications
Palliative Care- Dont worry, it's not the same as elderly palliative care. They simply coordinate our visits and keep track of Haddie's ongoing progress

Parkersburg- Our Pediatrician
Help Me Grow- Works with us on Haddie's physical therapy and her speech therapy (aka feeding). They come into our home once or twice a month.

Marietta- Speech and PT
We go over once a month to get some extra tips and advice for feeding and physical therapy

So anyhow, we met with Neurology to talk about Haddie's seizure medications Haddie didnt really have seizures until the shunt infection. So we are not entirely sure that she still needs to be on the meds. Dr. Enlow, our new doctor, said that may be the case but he's not so sure. He would have expected the seizures to stop after the infection cleared but instead we had to up our dosage on the meds.

But he's willing to test this out. We come back on January 7th to do an EEG. They will take a look at Haddie's brain and see if she has any signs of seizure activity. If she does not we will go with the "aggressive" plan. That plan would be to take away one of her meds and see how she does and then take away another med in a month or two. If she shows signs of seizures then we will go with the "conservative" plan. This plan will be to slowly tweak her meds and see what is going to work best for her over the coarse of a few years.

Haddie is a lot more alert these days. Our concern is that Phenobarbital could slow down the speed of her development. So either way we will see if there is a better option out there for her.

The other cool news is that Dr. E tested Haddies reflexes. When he pressed on the bottom of feet her feet shook a bit. He said this was due to Cerebral Palsy. We knew that Haddie could have this from the get go. He said though that he would expect someone with CP to be a lot tighter in her hands, arms, and legs...and Haddie is very loose. That was encouraging to hear because every day Kate and I do stretches with Hadassah to keep her loose....so it must be working.

3 nights ago we moved Haddie out of our room and into hers. She seems to be doing pretty well. All in all she is doing great. She is taking most of her bottle and she weighs over 12 lbs now! We meet with our doctor on Dec 30th to determine whether or not she will be getting a G Tube or if she can eat on her own without any tubes. We are hoping for the 2nd option.

Thanks for your prayers and please keep them coming. Pray that Haddie continues to eat well and that they see no signs of seizure on the 7th. God is good no matter what. We hope you all have an excellent Christmas and a happy New Year!!!!

7 Months

Hard to believe it has been 7 months! Haddie is growing and learning every day. We had a good doctors visit last week with our pediatrician. Haddie was up to 11 lbs 2oz. The doctor said she was gaining weight well and was happy with the amount she was taking through her bottle. We will meet with him again on Dec 30th to see how she's doing and then decide on the G Tube. If she's doing good on the bottle she may not need the G Tube...which would be great.

It's really cool to see Haddie making little steps. She seems to be getting stronger neck muscles and can lift her head a little bit better now. She also is getting better at tracking objects with her eyes.

The best feeling is that Kate and I are finally getting into a routine. We feel settled. We are comfortable leaving Hadassah with family and friends on occasion. Last night Kate and I went out on a date to grab some dinner and watch a movie.  What a blessing. It was good to just be a husband and not worry about being a dad for a little bit. Kate and I will make that a monthly practice...and I encourage parents out there to do the same. It really was an enjoyable night.

We are very thankful for your continued prayers. Here's a cute video of Kate's family and Haddie on Sunday afternoon:

Snoozin